Ten years has been the duration of my husband’s disease, which has made his movement difficult, and has weakened his cognition. The progress has been slow, starting out mild, and reaching advanced stages in recent years. In his early 70s now, he has various additional conditions, contributing to his poor health.
We reached the 30-year mark of our happy marriage, and then my new role as his full-time caregiver became another milestone for us. He is no longer independent at home, as he had been while I worked full-time during most of these 10 years of his disease. And, now during my full days with him at home, I cannot be the same person I was when we were together only evenings/nights, and weekends.
When he was alone on weekdays, and my caregiving role was evenings/nights and weekends, he had autonomy for his daily meals, medicines, and routines. As his caregiver 24/7 now, by contrast, I cannot spend the days in monitoring his success — or lack thereof — with the autonomy he’s had previously. I’m in this role, specifically, because he needed that much help to stay safe and well. Naturally, I’m not thrilled about this, and neither is he. However, we were happy enough to choose that option from a group of equally challenging options.
My love for him has become more in line with, possibly, a mother’s love for her own aging father. My caregiving for my spouse is now far from romantic, in my mind. I suppose the spark is gone for me, due to my own physiology as much as my repurposed love and affection for my husband. He’s quite different, often behaving more like a rebellious teenager would behave with family. Regardless of the stimulus for his spontaneous, frequent “be sexy now” instructions to me, I’m usually not inspired and therefore will not engage. To which he generally will choose to continue asking/ instructing/ taunting/ begging until he gives up.
I have no one to talk to about this, although I receive a lot of encouragement from friends and family. This is just such a very personal “taboo” for discussion, is it?
This is a very difficult topic at best and I don't have the kind of answers you are looking for. It would probably be most beneficial to talk to a counselor regarding these sensitive issues.
That being said, I can only offer you some understanding. One of the problems I see right off the bat is when you said your love for your husband has become like a mother's love for her own aging father - that would lead you to have a "this isn't right" or "taboo" feeling towards a normal husband/wife intimacy. Also, the fact that he behaves differently i.e. rebellious teenager that also, may be in the back of your mind as once again being "taboo." Undoubtedly, you are not inspired nor would anyone else be if they feel they are being given instructions to follow (and no one wants to be begged - that would kill spontaneity on the spot )so it's like the role flipped and you are now the teenager and he's the adult. All that does is create confusion within your own mind.
The spark is gone for more than just the repurposing of your love and affection. No one has an "on/off" switch. You have the fact that your not working your full-time job anymore in order to devote 24/7 care to him - caregiving is exhausting. The pandemic is not helping either as you are left with limited choices to help you get out of the house for a much needed respite and time away from him - some personal space.
Often in the caregiving situation, one feels trapped. It's very difficult to maintain a happy disposition which in turn doesn't make one feel the romance as in their more youthful years.
Even though it's not the identical situation you are in, I remember when my father passed away in 2004. It was the first death of a loved one I ever experienced and I was in deep shock and grief. I remember when my husband wanted to be intimate the following week. I just couldn't - my head was not there and in a strange way, it almost felt wrong to me.
I sure hope you will find a professional to work with you regarding these issues because it's really what you need for such a complicated situation with all the complex feelings you are experiencing.
You will be in my thoughts and prayers!
My appointments with a counselor therapist began a few years ago and — except during Covid and other occasional breaks — they have continued monthly or bi-monthly. You are correct!
If you have had such a long, happy marriage, I’m assuming that you’ve had good communication skills with each other. It would be a difficult conversation, but perhaps if there’s a time when he’s feeling peaceful and not asking for sex, you could discuss the matter with him. Acknowledge his desires/needs for sex and describe how the interest is no longer there, despite the fact that your love is still there. Perhaps you can come to a solution together. I hope it works out for you!
Do u have children? If so, remember when they were babies. The constant care for them. Not getting any sleep and if you worked...so tired you couldn't keep your eyes open...sex was the last thing on your mind. Same here. Now you are older caring for a much bigger baby. You just don't have the stamina you had when younger. Its hard to be intimate when you don't enjoy caring for someone.
I am mid-60s; when DH’s mobility disorder began with the diagnosis, I was mid-50s. It was jarring. Thank you sincerely for your support! I truly want to enjoy caring for my DH. It’s disappointing that my expectations for gratifying togetherness didn’t pan out, as we shared a fulfilling love. The metamorphosis in our roles was life-changing.
Also--he treats me like the maid/cook/housekeeper and that is far from making me feel desired or loved. He has not kissed me on his 'own' for years. I have to go to him. He chose to keep a huge TV in the master bedroom over having me sleep with him. It's on all night long, many, many nights. I moved downstairs years ago, so I could sleep!!!
I told him, 5 years ago when I remodeled a room to be his 'man lair' that he could use this room as his haven--and he does, along with the bedroom. The idea was that the TV would be moved into the den---he still says he's going to do it--but after 5 years? why should I believe him?
He's never had much of a sex drive--ever. I am frankly shocked we had 5 kids. The odds were sure against it.
My sister who is 66 and whose DH is 69 still have sex 3-4 times a week. we haven't had it in 7 years and then it was like, I dunno, 3-4 times a year.
We don't talk about it. He will roll over on his side and put a pillow over his head if I ever tried to talk about it. I just quit.
Sure isn't the plan I had for us. He blames me 100% for the lack of intimacy. That I know for sure. But if he won't even turn the d2mn TV off for 1/2 an hour and give me some affection--you eventually give up.
I can appreciate your frankness, it is a difficult discussion to have for a variety of reasons. Sometimes this situation evolves in a marriage even when you’re not the “caregiver”. I totally understand when you say that your love has changed. My husband has not been able to “perform” for several years primarily due to extreme weight gain and ED. We are in our 60’s which seems young to give up on our sex life but it really became a one sided chore for me which he seems to have understood. We have been married almost 40 years and I believe we still have a close relationship, but it’s changed for sure. It makes me very sad. We both wish the sexual part of our relationship could be the way it used to be. I have just accepted it as part of aging.
It is sad and although my husband and I haven't been married as long as you and your husband since we both got married later in life, we are dealing with the same thing. Unfortunately, with the aging so comes the health issues that can cause these unplanned outcomes. We still wonder if one of his surgeries played a role.
your relationship is different now but you can still be the loving caring spouse, but I think sexual thing is done.
cuddling hugs caressing is nice ..
no amount of talk counseling can
bring it back.. I think you have more than enough to worry about now so I wouldn’t feel guilty about it ... things and relationships change .. it’s nobody’s fault!!!!
good luck with everything else !!!
Life often throws us curve balls and it's nobody's fault - we just need to learn how to "make lemonade when life gives us lemons" as the saying goes.
Since you are 24/7 caregiving, it might be a good idea to have a little more help. Widen the support network to family, friends, community of faith, and even paid help so you can get some "time off" from caregiving. You have needs, other than sexual, that must be addressed and usually require "time off" to do so. You may come to see yourself as more than just his caregiver and more like his wife.
Great comment!
Before my husband and I got married, we had to take a pre-marital counseling class and Dr. Chapman's book, "The Five Love Languages" was required reading. He's right about us as individuals finding different things to be important in fulfilling us and I actually think it can be applied to any relationship as those things aren't specifically sexual in nature.
Like your idea of widening her support network!
Sexual interaction should be a mutual agreed upon thing. If you don't want to do it, then don't and don't let anyone make you feel bad about it.
It was nice to read a man's perspective on this issue. Very well said!!
That would truly be the ultimate pain for oneself to be married for so many years and not be recognized as his wife and yet continue in the caregiving role.
What you experienced is truly heartbreaking and I've heard of many others who have gone through that too but, you are to be commended for fulfilling your vows "for better or worse" in sickness and health. I'm glad you had no regrets.
Please look this up, copy the diet, and change foods, esp. fruits, vegetables (liike NO sauerkraut, cauliflower, broccoli, etc.) , Fruits allowed and not allowed also on list. Helped us a lot.
Rest assured, he will likely start forgetting. You will need to be patient. Sorry I dont have a better answer.
Hmmm. another option.. tell him a lie he might accept...( You have probably done this.....Oh, hon.... I really feel awful..) Or, how about tomorrow? ( which never comes)
Although it is against normal "rules" with dementia, it is ok....in order to keep the peace. I initially did not see lies as ok......but then realized what a practical tool they were.
Good luck. It is not an easy path you are on. Been there. You can get though it, too.
He cannot understand, because of his dementia. I think that this is the more unusual outcome, but I may well be surprised when I return to the thread. Most of my former patients tell me that the sexual love aspect of love seems more to just go away, or get transferred to a cute young caregiver. Many told me that their spouses are happy enough just to sit holding hands and watching TV.
Other than just letting it "run its course" and not respond to it, I am not certain what you could do.
And James is right. This isn't a part of "wifely duty". In fact, what the heck IS that? Wifely duty. Is that like a husband has to be able to fix the clogged elbow under the sink?
After reading the other comments, I was reminded of a couple other thoughts since my original post and how you truly aren't alone in having these feelings. I've often said, when we're going through anything unpleasant or difficult we somehow think no one else in a world filled with over 7 billion people is experiencing the same thing.
Someone doesn't even have to be taking care of a spouse to be in this position (no pun intended). Since my parents were 40 years older than myself, my time to start caregiving was at age 41. After my dad passed away, I did oversee my mom for ten years to varying degrees and then she was diagnosed with Alzheimer's in 2014. Even though she's been in a facility for five years there was ongoing stress especially dealing with her facility. It was crisis after crisis so I just couldn't handle all of it. Even the thought of the phone ringing with a problem caused me anxiety. Severe stress is not conducive to romance/intimacy especially when you have no support from extended family and no siblings to help.
Even if you talk to friends and family, they may be the least to admit the same issues. On a forum where no one knows one another, you are more likely to hear it like "it really is." As the old saying goes what goes on (or doesn't go on as is the case here) behind closed doors can't truly be known.
As for hypersexuality, I've read certain types of dementias have this as part of their disease more than others. I remember my mom visiting her sister whose husband had Parkinson's/Lewy Body dementia and he was trying to make passes at my mom (even several in-home caregivers couldn't handle it and quit). That did not go over well as we had known him for so long - it was very distressing for my mom who had just been diagnosed with Alzheimer's.
A man in my Alzheimer's support group had been married to his wife for over 40 years and they were extremely close during the course of their marriage and did everything together. She was no longer capable of any of those things and he missed the companionship. He had met a woman whose company he enjoyed. He wanted to know from the group leader if it would be ok to spend time going dancing and dining with this woman. Was that all he wanted? Who knows. I was approached in another group by a man whose wife had the disease and he wanted to meet for coffee at McDonald's around the corner for companionship as well. I declined as being married I didn't want to put myself in a compromising position.
As you said, the spark is gone - "Helenn" said "once spark (sic) gone...it's gone!!!" and Bruce Springsteen's song "Dancing in the Dark" says "you can't start a fire without a spark." So very true!
I hope you will follow through with your goal of several "getaway" days for at least your own enjoyment!
I would offer with due respect is that women's assumptions that 'older men lose intrest in sex, as do women"...and in some cases, such as you, consider that sexual desire in an older or impaired man is an 'illness'...it is far from it...It is a sign of life...And the greatest driving force of Nature to procreate.
The truth is he is not the man you married.. right? Do what is best for him and yourself-- get some help-- you cannot carry this alone. It will eventually eat your breakfast, lunch, and dinner. It did mine after just four years-- and then 11 more in a ALF... and she was gone. I am burying her in October.
I didn't realize until I have become my grandfathers caretaker that men Always need sex...regardless of age, circumstances or ability lol!
'need' meaning that 'if hey do not receive it in some form, they self destruct'
Its impossible to wear 2 opposite hats in a relationship, as you are finding out.
If you continue taking care 24/7 with the same actions, you will get the same outcome.
If you get someone to come in to assist your husband, (at least part time) there is some room left for intimacy.
Its impossible to see ourselves & our own lives clearly.
I remind myself often of Albert Einsteins wise saying:
"Insanity is doing the same thing and expecting a different result"
I still repeat patterns that don't work ..however, as soon as im aware of it I change things :)
Hang in there..keep your head up...Remember, you Always have options :)
follow your feelings and don’t feel guilty.
I contacted his psychiatrist today who basically blew me off to Memory Care, which know little of FTD. This community of perspectives is a blessing. I stay mindful, take care of nursing duties, give myself minibreaks, and have a safe house to run to when needed in the spiral downward. The pandemic is certainly exacerbating everyone's irritability, and here in California, we choke with smoke from the fires.
It's a hard passage, my heart extends to you.
From your description of his condition, sex with him would be a one-sided, unsatisfying (for you) CHORE.